Staff at Department of Food and Resource Economics – University of Copenhagen

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Communicating identifiability risks to biobank donors

Research output: Contribution to journalReview

Recent highly publicized privacy breaches in healthcare and genomics research have led many to question whether current standards of data protection are adequate. Improvements in de-identification techniques, combined with pervasive data sharing, have increased the likelihood that external parties can track individuals across multiple databases. This article focuses on the communication of identifiability risks in the process of obtaining consent for donation and research. Most ethical discussions of identifiability risks have focused on the severity of the risk and how it might be mitigated, and what precisely is at stake in pervasive data sharing. However, there has been little discussion of whether and how to communicate the risk to potential donors. We review the ethical arguments behind favoring different types of risk communication in the consent process, and outline how identifiability concerns can be incorporated into either a detailed or a simplified method of communicating risks during the consent process.

Original languageEnglish
JournalCambridge Quarterly of Healthcare Ethics
Volume27
Issue number1
Pages (from-to)123-136
Number of pages14
ISSN0963-1801
DOIs
StatePublished - Jan 2018

ID: 187261564